HNPP - Surface, Surface, Surface!

[Guest guest]

Well gang, I've finally blown all ballast tanks and surfaced after

quite an extensive underwater cruise with HNPP the past several

months. I actually don't know where to begin so, I'll start with

where I left off back in June.

It seems I've taken several hits of the disease including a new side

issue - heart problems. I've been under the care of several doctors

trying to assist stabilizing my current medical circumstances. And,

test are yet to come. Addressing the heart issue, I'd started

feeling rather " punk " sometime ago and thought it was from the

medications. As it turns out, ischemia was the culprit in the lower

left ventricle of my heart and calcification of the aorta. I've been

placed on the appropriate meds and it's been determined to " wait and

see " as to what's next.

During all these tests for heart issues it was discovered that I now

have bulging discs in the thoracic region and stenosis and

osteoperosis of the spine. So, it's rather difficult for me to

distinguish angina pain from disc pain.

Breathing problems seem to have worsened as well. I will be tested

soon for diaphram issues and doppler studies of the carotid arteries.

(A stroke has been suggested albeit minor) One can only guess at

this point that I probably have PAD (periphial artery disease) based

on the calcification issues in the upper vacsular system. I will

suggest testing for that as well during the doppler exam in October.

The breathing (labored) problem is positional (I can bring it on by

moving, bending at the waist, etc). My docs agree. The phrenic

nerve testing will also be scheduled soon. I did discover that just

because an x-ray shows what appears to be a normal diaphram doesn't

necessarily mean it's so. Swallowing problems still presist and that

is also going to be addressed soon.

For the first time since diagnosis in Dec. 03, I am finally receiving

physical therapy. It is limited to about 15 mins. in a pool walking

from side to side and light massage of the back only. The game plan

here is find what works and what doesn't to insure what muscle

strength that remains stays intact. The last thing I want to happen

is further irreversable injury to what muscles allow me to still sit

errect and walk very short distances. Part of the pool therapy is

directed toward balance as well. As much as I want to do more in the

pool, my therapist is close by, booting me out of the pool when he

sees I'm " pushing it " . After the first visit to the pool, I now

listen to him as well as my body. LOL Because there is no died in

the wool protocol for physical therapy for CMT/HNPP, and because each

of us presents differently, this is truly experimental therapy. For

those of you who may be wondering, stretching is NOT part of the

regimine of therapy. All the docs and PTs I deal with have done

their own research as well as reading what I've supplied them and

agree the damage would be devistating to follow a stretching

therapy.

I've now recieved my new and improved mobility device. It's major

kewl actually. It's an Invacare electric wheelchair with tilting

seat that can turn 360 deg. standing still. I've had it for one week

now and I can tell you it has made a major difference being able

to " motor " around my humble abode and on outings. I was able to go

to the VA appointments in Portland by AMTRAK from Salem, city bus to

the hospital, and return with out a hitch and comfortably. It was

much easier on me than riding in a car up there, using a manual chair

with assistance, and then riding back in the car. Only two days down

time instead of the usual 4 to 5 days. Amazing!!! It's a kewl candy

apple red with yellow shock springs and is quite an eye catcher.

Now, if only I can figure out how to drive it to Barbados!

The progression seems much more rapid now and nothing I seem to do

slows it down. I'm just grateful I'm getting the " creature comfort "

help I need at this stage of the disease.

I've been asked by the PT dept. at the Regional VA Hospital to

present a white paper about CMT/HNPP sometime at the end of this

month or the beginning of October. They've asked me to come to

Portland where I will be video taped and the tape will be used as a

training tool for the folks in PT and kinesiology within the VA

medical care system in Portland/Vancouver facilities. They want me

to present the disease from the prospective of a patient. My

tentative title for the presentation will be, " A View From My Window -

A Patients's Perspective Of CMT/HNPP " . My intent is to promote

education about CMT/HNPP for medical care providers as to the true

affect this disease actually has on our daily lives, it's emotional,

social, and physical involvement, and how the care givers can become

an interigal part of our daily and future care. There will much more

to what I will be presenting but thought I would just give you an

idea what direction I am going with this. And, as usual, any input

any of you wish to give to this endeavor is always welcome. It is

also my intent to recognize any and/or all of you as contributors to

my effort with respect to your privacy always. After all, this is a

team effort by all of us with this disease.

It should be noted that since the VA has discovered " me " , they have

(at least those I've dealt with) shown a high level of interest,

compassion, and assistance for not just " me " but it now seems several

other Vets with CMT. I still remain the only CMT/HNPP patient being

seen in the Portland VA system. I learned on Tuesday last that CMT

patients are now surfacing in single digit numbers. My educated

guess is that misdiagnosis and/or missed diagnosis is the reason.

I've been following ALL the posts and don't know where to begin to

respond in kind. So, I'll try one issue at a time when I can. But I

must say thanks to all of you who have sent me personal emails and

apologize for not answering all in a timely manner. Fatigue seems to

have taken taken a new deminsion in my life and it's taken me nearly

40 mins. to type this note to you all. But, I surely will not let

that stop me from participating here or in life in general. Just

have to re-adjust my pacing once again.

I'll close for now. I certainly will begin posting more frequently

now that I've found my new limits barometer.

DIVE, DIVE, DIVE! Make your depth 60 feet! Raise #1 scope! (don't

really feel like going to test depth anymore - LOL)

rQn I

!